I’ve been struggling for a few months now about trying to get things done for myself such as getting meds, getting all the paperwork done needed for my million dollar wheelchair (sarcastically) that Michigan rehabilitation services requested that I buy, and other things.

As you all know, or people that know about the struggles with MS some of the things that often happen are: dropping things, falling down, fatigue, balance or vertigo issues, trying to do things, but not mobile enough to things, examples like that. God forbid that I share any problems with the more personal stuff like losing control of your bladder!

I posted a picture on my Facebook account about my dinner that I had made the other day and when I sat down I dropped my bowl of food. One of the comments that someone put on my feed was “again”?

I’m thinking to myself, OK! stuff like that infuriates me because this is not something that is a once in a while thing, It happens all the time. Having MS does not go away, the symptoms do not go away, the problem is that we have with the disease does not go away. How does the word “again” help?

The last couple of months have been the most hardest for me I think. I’ve been seeing a therapist because I have a lot of issues that have happened to me the last few years that I need to get resolved and heal. One of the problems that I’ve been struggling with is trying to get medication for my MS and that it’s very expensive so I was sharing that with my therapist. One of the comments that she made was why don’t you just move to Canada so that you can get free medication. Is that a solution to my problem? In order to get free healthcare in Canada are you have to give up your US citizenship.

Just recently my doctor told me to stop working and do not earn any income so that I can apply for Medicaid and all of my expenses equipment medications everything will be paid for by the state. Is that a solution to my problem? I’m still on school and I enjoy working I think it keeps me active and moving. Just recently my doctor told me to stop working and do not earn any income so that I can apply for Medicaid and all of my expenses equipment medications and everything will be paid for by the state. Is that a solution to my problems? I’m still in school and I enjoy working I think it keeps me active and moving.

Do people really think about what it means to have a disease or a physical challenge before opening their mouth and saying stuff that does not help?

So… found out yesterday my copay for the MS drugs is $3,024.55, monthly. There’s a generic brand, but the pharmaceutical company won’t give me a copay cost because my neurologist needs to call and get a coupon. 😳 called neuro office, said it’s just a formality to find other solutions for me because of Medicare guidelines. MS drugs covered but must pay 33% copay. 😐 I have to continue to advocate for myself to figure out how to get meds so I will feel better. No one has a solution, so I continue to keep tracking, fighting, problems since 2013. Year 5… oh but… Medicare will cover 80% of a $25,000 motorized wheelchair, cochlear implants, gastric bypass surgeries, but not MS meds that could help me. 😡

After purchasing Hemp oil 2 months ago, I decided to start taking it on 8/26/18. For the first time since 2011, my right hand is almost pain free. Instead of the whole right hand being numb and full of nerve pain, it’s just at the tips of my fingers and in the middle of my hand. 🤞

My fingers on my left hand, are starting to flex and become straight, but nerve pain is still there, I’m so hopeful. I will keep taking it twice a day and keep documenting my progress. 🤞

Oh and the nerve pinches and constant twitching in my legs is much less. Still there, but not constant. 🤞

The hemp oil was purchased from http://www.cwhemp.com

Reflections of my Chronic Diseased Life:

When I advocate for myself, it’s harder, I think. Current situation is trying to get a wheelchair seating evaluation. With VP interpreter, does the tone of the 3rd party such as a nurse, counselor etc., really match the ASL? I was told again and again that “I NEED TO HAVE A GOOD RELATIONSHIP AND SOFT SKILLS WITH THE PEOPLE TRYING TO HELP ME (said very abruptly on my calls) and need to cooperate. It’s interesting, because I do not blow up on the VP, but I do emphasize strongly what I am trying to say or need. Is the tone set by the VP interpreter?

Is my signing that bad that the interpreter continues to keep talking when I’m done signing? Why is that? I sign Exact English most of the time.

Or, when I’m talking, I’m constantly being interrupted by the VP interpreter because the 3rd party is talking. 🙄 (the vp interpreter does not say – excuse me, Pam is still talking, please hold. Really? 😠

Is my signing so bad, that it takes a hearing person to get involved to fix things or to say the exact same thing I said (oh and I faxed my issues) to my health care professionals?

My favorite: when question the health care professional, the answer I receive is: I have the knowledge and training along with other feedback to determine what is needed, for you, (btw: the info is wrong on the report).😳

I’m trying to be understanding, patient, provide awareness and educate all at once. Still getting interrupted, misunderstood, annoyed and all that.

It’s almost 3 am and I’m struggling to sleep. Laying in my chair, my body is hot and cold. My skin on my legs and arms are very red. My muscles twitch and spasm different locations every few seconds. My nerves pinch me and cause me to twitch hard because it hurts. My toes pinch and throb off and on. My left hand feels like I’ve electrocuted it. I lay here thinking, what would it feel like without the pinches that prevent me from sleeping. My right leg is now on fire. I’m grateful for my fan blowing on me. Could be worse. Bound and determined to try to sleep and not let my MS kick my butt.

How does a person with a chronic disease accept when someone says, “you must accept your disease to be able to live everyday” when I am living it, everyday. I’m in school, I’m working part-time, I’m still cooking, doing art, living on bare necessities with SSDI and PT income.

I have good days and bad days. I get out maybe once or twice every 2 weeks, woot! I rest on the bad days, but I still do what I need to do. Is this ok for someone to say? I don’t think so and I’m really bothered by that comment.

And… what about people who say to me “ALL” the damn time, I need to get away, I deserve to go out, I deserve a drink, its not fair others can go to Florida, I should go too. I sit in silence, most of the time tired or in pain, watching them complain or talk to me, thinking thoughts I cannot say on here.

In spite of all this, I still hope things change for the good, just forgive, love, and accept those who do not think about what they say does affect others especially who have a chronic disease.

Latest barrier is not being able to type my final project and research effectively, but as someone said, “you must accept having this disease to be happy”, will allow me the use of my mobility issues right now, interesting! Just thinking extremely aloud and personal.

Reflections of my Chronic Diseased Life:

When I say, “I don’t feel well” and you say with impatience or ignorance, “you never feel well” or “what’s wrong, now”? Knowing what I have, sigh.

You are not understanding that there are many levels of the chronic symptoms that I live with. How I may look to you, looking or showing there is nothing wrong, the feelings and symptoms were not too bad yesterday, can be killing me today. It doesn’t go away.

Bound and determined not to let MS kick my butt!

Sometimes I’m not able to do much in terms of cooking because of the Multiple Sclerosis. I needed to come up with recipes that require minimal prep time, but healthy, nutritional, and has benefits to autoimmune diseases. This is my grass fed beef bone broth bowl with sliced mushrooms (Vit D benefits), baby spinach, grated fresh ginger, turmeric, leftover thinly sliced grass fed ginger steak. Took me not even 10 mins to make. Warm filling and nutritious. It helped with the fatigue some too. Total carbs 4 / Cost to make $4 (sorry the meat was on the bottom I forgot to stir up the broth).

Reflections of my Chronic Diseased Life: Today, my independence was tested. On the beginning of each month, I have errands to do. One of the three most important things are: go to the bank and get a money order to pay rent, go to Toledo to my most favorite restaurant in the entire world, First Watch for breakfast, and then head to Fresh Thyme to stock up on meat for the month because the prices are fabulous for organic grass fed proteins.

The bank and First Watch went off without any difficulties. Fresh Thyme, sigh. My scooter decided to be extremely problematic. The column where I steer and control the speed, has a large knob where you can unlock or lock the column to upright or down position, fell off. The scooter is now not steerable to go anywhere. My friend Caroll Madden Schlorff and I could not attach the knob back to the scooter so I could drive it. We were in the parking lot and I was trying not to scream and just cry.

My anxiety and panic set it. How will I access my apartment when I get home? I cannot walk for more than 5 feet. After 15 minutes of trying to attach the knob back with no success, Caroll put the scooter back in my car, we head back home. Everyone we know has plans or is busy and cannot help to put the knob back on. This becomes scary for me, I need to have a backup plan. It was the most longest stressful drive home. This means I need to have a wheelchair ready to transport me from the car into my apartment when the scooter does not work.

Caroll went to my apartment and got my walker. I had to walk from my car to the apartment, with her in front of my walker to prevent me from losing control when my legs do not move. This long ass walk to my apartment took about 20 minutes. By now, my body feels like a bowl of jello, my legs are just useless and I’m worn out.

I’m not sure what my next steps are. I know first thing Monday morning, I will be making a service call to get my scooter looked at. Second, get my backup plans in place because this was a wake up call. Third, try to be optimistic and not let my MS kick my chronic diseased butt!

I drop things easily, sometimes when I’m working, sitting in my chair – I fall over. When I’m typing for work, I think my fingers are working, they’re not.  When I receive packages with art supplies or envelopes, I  need help opening them. When my friend Caroll Madden Schlorff and I shop for food, I zoom around in my scooter and she follows me with such patience, I’m lucky. When we get home, she opens boxes, packages of toilet paper and paper towels to have them available for me, it is easier for me to use things. When I cook something for myself,  after 10 minutes of standing, I’m hunched over and cannot walk well. My cat Opie, lays all 18 pounds of her on my legs, they become hot and numb, but that’s ok, she loves me. When friends want to call and talk, my hands don’t cooperate to sign, I’m fortunate, they understand when I get frustrated. All of these happen everyday, but those things do not define me. I am bound and determined not to let my MS kick my butt.